Archives for December 31, 2019

AND, THAT’S A WRAP FOR 2019!

HAPPY NEW YEAR TO EVERYONE AS WE WELCOME 2020!
As we take a look back at all that our Ear Community Organization did in 2019, we made a HUGE positive impact on our community both here in the US and around the world.

We kicked off the year with our whole genome sequencing research on Microtia and Aural Atresia with Harvard and MIT and the Broad Institute thanks to a grant received from the Gabriella Miller Kids First Pediatric Research Foundation. We are anxiously awaiting the results!

Not only did we advocate on Capitol Hill in Washington, D.C. many times this year for hearing device coverage, we were successful as we were able to have a bill introduced and sponsored by Congressman Joe Neguse (co-sponsored by Congressmen David McKinley, Mike Thompson and Cedric Richmond) that will ensure that private insurance providers offer coverage for Osseointegrated Devices (OID’s), covering bone anchored hearing devices and Cochlear Implants. Some of our Ear Community Families who advocated even had the opportunity to meet Gaten Matarazzo from the hit TV series, “Stranger Things” while on Capitol Hill with the NIDCR/AADR! Ear Community also met with the NIH to discuss current research on craniofacial microsomia and Microtia and Atresia!

While educating at the EHDI (Early Hearing Detection Intervention) meeting in Chicago this past March, we not only were able to update many audiologists, teachers of the D/HOH and a variety of medical professionals along with parents on Microtia and Atresia, but we met Rachel Coleman (actress and producer) of “Signing Time” for ASL learners!

In May, Ally Tumblin, co-founder of Ear Community, was recognized by the HearStrong Foundation for her advocacy on hearing loss and Microtia and Aural Atresia.

And of course we focused on bringing Microtia and Atresia families together once again this year at our educational events! We brought 1,300 people together in 2019 where we had our largest Vanderbilt conference and picnic yet! We also Collaborated with doctors and researchers on the CAUSE study for craniofacial microsomia/MA. We awarded 2 college scholarships and donated 9 hearing devices to children and adults both here in the US and abroad! We also helped many families on their IEP and 504 Plans, appeal for hearing device coverage, wrote and submitted lots of articles, attended the Oticon Medical annual advocacy meeting, Ear Community was spotlighted in a presentation at the Stanford Medicine X Change conference, presented by well respected community leader and entrepreneur, Liz Presson, Founder and CEO of Pursuit, “The Power of Female Patient Advocates: Voices of women who are being heard and evolving healthcare on their own terms” and our organization celebrated our 4th National Microtia Awareness Day on November 9th along with an American Flag flying over the US Capitol in honor of our awareness day! Congressman David McKinley’s office also tweeted about National Microtia Awareness Day! We even had our first edition of holiday cheer t-shirts this year!

Thank you to all of the families in our community for making Ear Community who we are and thank you to all of our amazing sponsors for helping make our events possible and for all of the support we receive.
Thank you to our Platinum Sponsors!
Cochlear Americas and Oticon Medical
Vanderbilt University Medical Center Vanderbilt Bill Wilkerson Center

Thank you to our Silver Sponsors!
Stryker and MED-EL MED-EL USA

A very special thank you to our donors as Ear Community would not exist without your continued support to our organization!

We look forward to seeing everyone in 2020!
Everyone at Ear Community!
www.EarCommunity.org

Link to article on Broomfield girl inspires hearing aid legislation U.S. Rep. Joe Neguse advocates for insurance coverage

Link to press release on Congressman Neguse Introduces Bipartisan Bill to Increase Access to Specialized Hearing Devices

Link to FB story for 2019 Ear Community year end: